Serial Killer

When I Have Fears by John Keats

“When I have fears that I may cease to be

Before my pen has gleaned my teeming brain,

Before high-pilèd books, in charactery,

Hold like rich garners the full ripened grain;

When I behold, upon the night’s starred face,

Huge cloudy symbols of a high romance,

And think that I may never live to trace

Their shadows with the magic hand of chance.”

Nearly every night recently I’ve had dreams of some bad guy waiting outside to kill me. I could attribute it to all the scary shows my husband and I watch—real life is too scary for me so we like tales of the supernatural, especially if the good wins over the bad. But I’ve watched these shows forever and never had bad dreams. In this dream, a bunch of us were trapped in a glass-filled house and I kept urging people to turn off the lights so he couldn’t see in. I could see him in his white hat crouched in the yard. I tried every strategy I could think of to get out the door and run, even though it was cold and rainy. But then I remembered my dog with me. How could I escape with her, with me being too weak from mastectomy to carry her for long? So I decided to stay. The next thing I knew the serial killer was at the door and had made a deal in cash with someone in the house to come in so he could get close to me. And I woke up at 4:20.

So many metaphors here about my relentless disease.

And here’s the latest news—my oncologist of three years is leaving. . Brightsidedness? I have other good options, but this hospital and service have been a type of refuge for me. And I liked my young doctor. Maybe I was too much for her—with all my questions of “can you cure me?” I also love the infusion nurses, the staff who make my appts, my masseuse Dena, healing touch with Lynn, the physician assistants, and my nurse navigator Susan Rutherford. I can probably keep same radiologist, though, but must find best oncologist and that might mean another center.

A new book has come out called “The Undying” by Ann Boyer with my type of cancer. I read a NYT review this weekend. Compared to my experience she’s a wimp bc she went through process once and was cured. She laments getting the a&c that could kill her and I’ve gotten it twice and I’m 20 years older. But I identify with her in many ways—her desire to dress up for chemo, to wear a wig so she doesn’t look pitiful, her desire to understand it all. She writes “The world is blood pink with respectability politics…as if anyone who dies from breast cancer has died of a bad attitude or eating a sausage or not trusting the word of a junior oncologist”... And “I had believed it was no longer very deadly and that its treatment had been made easy,” and that “your life gets a little interrupted but then you get through.” Truth!

A few months ago I was with some older people and I commented, “I just want to see my grandkids grow up.” This mid-eighties person said to me “I just want to see my great grandkids grow up.” I was shocked but shouldn’t have been. We all want to live. But I was shocked mostly that this person could not register that I was much younger. I was shaking my head inwardly at this person’s lack of self-awareness.

The things people say! I was at yoga at cancer support community and not wearing my wig. (I do have some short curly hair now.) Not knowing my cancer had returned for the third time, an acquaintance said, “you look good!” First thing out of her mouth. She has had cancer and apologized and said “ppl often say that to me, and I know it’s wrong, but you look good. I know!” I understood her response but maybe it’s better to say, “how are you?” first.

Speaking of things NOT to say:

*don’t say “AT LEAST…” I’ve been tempted myself to say it but it will probably make me angry if you say it to me. What I hear is “at least you’re not dead yet” (no one actually says but…) “At least you have options.” “At least you can be happy because of xyz.” Believe me I think of all the positives of my situation, but I’m tempted to say “At least you haven’t gone through extreme cancer treatments for 3 years and have your mom die in the process. If you do, talk to me then, and see if ‘at least’ makes you feel better.”

*Don’t launch into a long detail about your cancer experience. Don’t make it all about you.

*and especially don’t pretend to support me seeking medical advice for yourself. It’s very clear when you do that. There’s a time and a place for comparing notes, but not when I’m lamenting.

*Don’t be a medical expert. I have heard or read so much and get tired of bad advice. I liked the way my endrocinologist approached it—first he asked questions and then humbly suggested I do a search on breast cancer and fasting. He jokingly said,”I know just enough to be dangerous.” If you must offer advice, an easy way to do it politely is to say “you probably know this, but I’m wondering…”

*Don’t expect me to be positive or remind me to be positive. See above quote by Boyer. …”as if anyone who dies from breast cancer has died of a bad attitude…”

DO

*Ask me how I am (this terminal business is scary).

*if you get inspired, email or send a note or whatever. A kind friend brought a casserole last night without plaguing me with lots of questions. I get overwhelmed making decisions.

*Remember I get tired by 8 at night so make events early. And don’t be offended if I don’t accept your invitation.

Just some thoughts at 5:46 this morning. Chemo supposedly tomorrow if my platelets have recovered. So wish me luck as I seek a new doc by the end of December.

By the way, Keats died at 26 of tb. Now we think, what a senseless death because we have cures. Maybe someday we can say the same about cancer.